Becoming Inactive On The Kidney Transplant Waiting List
Please inform your kidney transplant coordinator of any travel that will take you outside the 12-hour window for kidney transplant surgery.
If you must travel, we may place you in an inactive status on the kidney transplant wait list.
Other reasons we may place you on the inactive list include:
- Needing further testing.
- Having certain health problems that might increase the risk of kidney transplant surgery.
Inactive status will not affect the total amount of time that you have been on the active waiting list.
Stages Of Returning To Normal Activity Including Work
Resuming normal activities gradually, only if you feel up to it. Engage in normal activities like catching the bus and going to the movies, and attending parties.
It is recommended you start slowly in the first instance. This also includes sexual activity. If in doubt, ask your doctor. Dont be shy they have heard it all before. It is also important that female recipients discuss contraception methods to prevent pregnancy in the early months following a heart transplant.
Returning to work is a big step and you should carefully consider and plan your return well in advance. Consult with your transplant team before you resume work. There may aspects of your job that you may not be able to resume immediately or even in the near future. Please refer to the section on life Skills for more information.
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Have Your Kidney Transplant
During kidney transplant surgery, a surgeon places a healthy kidney into your body. Youll receive general anesthesia before the surgery. The surgery usually takes 3 or 4 hours. Unless your damaged kidneys cause infections or high blood pressure or are cancerous, they can stay in your body. Surgeons usually transplant a kidney into the lower abdomen near the groin.
If youre on a waiting list for a donor kidney, you must go to the hospital to have your transplant surgery as soon as you learn that a kidney is available.
If a family member or friend is donating the kidney, youll schedule the surgery in advance. Your surgical team will operate on you and your donor at the same time, usually in side-by-side rooms. One surgeon will remove the kidney from the donor, while another prepares you to receive the donated kidney.
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Evaluation Of Addictive And Harmful Behaviors
If your disease is the result of addictive or abusive behaviors, such as cirrhosis caused by alcoholism, you will be expected to be free of such behaviors. Transplant centers vary in their policies regarding the length of time a patient must be drug-free to qualify for a transplant, but most will test for drugs regularly.
Social workers will help you seek counseling and support groups for your addictions if needed. An inability to control addictive behaviors will exclude patients from being listed for a transplant.
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What You Should Know About The National Kidney Transplant Waiting List
For many of the millions of people living with kidney failure, a kidney transplant is considered the most ideal and desirable treatment option. However, transplantation is a process that can take months or even years due to the number of people in need of a new kidney.
If you dont have a living kidney donor or if your donor arrangements arent finalized, registering on the national kidney transplant waiting list for a donor kidney is an important step. Once youve registeredwith help from your social worker and a referralyoull be on the list to receive a kidney from a donor when a match becomes available.
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Your Ability To Manage Your Health Before Transplant
The transplant center will be looking for indications that you are able to manage your health and that you care about maintaining your health whenever possible. For example, if you are waiting for a kidney transplant but you are not following your healthcare providerâs instructions, you may not be considered a candidate. The post-transplant regime is rigorous and requires diligence your ability to follow your current regimen will be considered an indication of your willingness to take care of yourself after surgery. Non-compliance with important health maintenance instructions, such as drinking alcohol while in treatment for a liver problem, could exclude an individual from the liver transplant list.
How Could I Get A Transplant Sooner
There are different kinds of donated kidneys some with shorter wait times. It will be your job to choose which of these kidneys youre willing to take being open to more than 1 kind may make your wait shorter. Each donated kidney has a KDPI score. This is a score from 0-100. The score measures how long the kidney is likely to work. A lower KDPI is better.
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Additional Medical Testing Required For Transplant
If you are a candidate for an organ transplant, you will undergo further testing. If your organ failure happened quickly, is progressing quickly or is considered an emergency, the testing may occur in a matter of days rather than weeks.
Your testing will also evaluate your ability to tolerate surgery. For example, if you are seeking a liver transplant, you may still be tested for heart, kidney, and lung function to make sure you are able to tolerate surgery and anesthesia.
You will be evaluated for the presence of cancer, as an active case is a cause for exclusion from transplantation. There are exceptions, such as skin cancer, which would not prevent you from receiving a new organ. You may be asked to have a mammogram, a colonoscopy, or another medical testing to help rule out the possibility of cancer.
If you are approved for the transplant list, your testing will include blood tests that look at your genetic makeup since it is a component of matching organs with recipients.
The Waiting Game: How To Endure The Transplant Wait List
If you are on the organ transplant waiting list , you have probably experienced all kinds of emotions: Excitement, nervousness, anxiety, fear, joy, guilt. Maybe all in one day!
The average time spent on the waiting list for a kidney varies from region to region. But for most patients, that wait is measured in years, not months. As the years go by, some people go about their daily lives and forget they are waiting for a life-changing call. Others feel mounting anxiety and hopelessness.
All of those feelings are completely normal, says Heather Ambroson, PsyD a psychologist and postdoctoral fellow at University of North Carolina Transplant Clinic. Initially, there is usually excitement to get on the wait list. After you settle back into the daily grind, that excitement wears off, she says. It is very normal to have mood changes while you are going through this process.
The good news is that there are steps you can take to make the wait a little less stressful.
Do not hide your feelings. Many people on the transplant list put on a brave face, even if they are struggling inside. Some are even afraid to tell their providers what they are feeling, for fear it will hurt their chances of receiving an organ. Some people think they might be taken off the wait list if they are feeling depressed or anxious, because their doctors will think they are not a good candidate, Ambroson says. But that is not the case.
What Is Kidney Disease?
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Receiving A Kidney From A Deceased Donor
The average wait for a deceased donor kidney transplant in the UK is 2-3 years.
Some patients wait much longer than average, some wait a shorter time. To receive a kidney from a deceased donor, you will need to go on the transplant waiting list.
Your transplant team will try to predict how long they think your wait might be. A calculator is being developed by NHS Blood and Transplant statisticians to help estimate this. When it’s ready, you’ll find a link to the calculator here.
Not all kidneys from deceased donors are the same some kidneys might carry more risks than others. If you are willing to accept a higher risk kidney, then you are likely to wait a shorter time on the transplant waiting list.
In general, you wont wait as long for a kidney transplant if you:
- Have blood group AB
- Have a common tissue type
- Have fewer antibodies in your blood
What Are The Possible Problems After A Kidney Transplant
The donated kidney may start working right away or may take up to a few weeks to make urine. If the new kidney doesnt start working right away, youll need dialysis treatments to filter wastes and extra salt and fluid from your body until it starts working.
Other problems following kidney transplant are similar to other pelvic surgeries and may include
- bleeding
- hernia
- pain or numbness along the inner thigh that usually goes away without treatment
Transplant rejection is rare right after surgery and can take days or weeks to occur. Rejection is less common when the new kidney is from a living donor than when its from a deceased donor.
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What Is The National Transplant Waiting List
The national transplant waiting list is a list of all the people in the United States who need an organ transplant and want to be matched with an organ from a deceased donor . The list is managed by the United Network for Organ Sharing , a private, nonprofit agency that works under contract with the federal government.
There are more than 106,000 people on the national transplant waiting list with 92,000 waiting for a kidney.
How Do I Know My New Kidney Is Working
Blood tests help you know your donor kidney is working. Before you leave the hospital, youll schedule an appointment at the transplant center to test your blood. The tests show how well your kidneys are removing wastes from your blood.
At first, youll need regular checkups and blood tests at the transplant center or from your doctor. As time goes on, youll have fewer checkups.
Your blood tests may show that your kidney is not removing wastes from your blood as well as it should. You also may have other symptoms that your body is rejecting your donor kidney. If you have these problems, your transplant surgeon or nephrologist may order a kidney biopsy.
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Learn About Living Donation
Since less than 1% of people pass away in the conditions necessary to become an organ donor there will likely always be a shortage of necessary organs. Thankfully, there is a great way to help save lives and address much of the transplant waiting list.
Since 90% of individuals are waiting for a kidney transplant we can help save lives through living donation.
A healthy living person can donate one of their kidneys or a part of their liver. Whether you know someone in need of a transplant or youre interested in becoming an altruistic donor you can learn more at Living Donation California.
How To Get On A Kidney Transplant Waiting List
If you or your child have chronic kidney disease or kidney failure, you may be eligible for a kidney transplant. Even if you are currently on dialysis, it’s best to get on a waiting list as soon as possible. Thats because people on dialysis do not do as well as people with healthy transplanted kidneys.
Don’t count on your dialysis center to refer you to a transplant center. Unfortunately, in a large proportion of cases, they dont. If you want to get off dialysis and get a new kidney, you have to be proactive.
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How Does The Waiting List Work
UNOS is informed whenever a deceased donor organ becomes available so it can match the organ with someone on the waiting list. The UNOS computer system uses complex methods to find the best match for the donated organ. It does not simply give the organ to the person who has been listed for the longest time .
What Happens When A Donor Kidney Becomes Available
When a kidney becomes available, your transplant coordinator will call you right away.
Before you arrive at the hospital, a member of UPMCs kidney transplant team will evaluate the donor organ.
If its a match, well prep you for surgery as soon as you arrive to the transplant unit. If the team finds that the organ isnt right for you, we will send you home.
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Receiving A Kidney From A Living Donor
If youve found a potential living donor, the average wait for a kidney transplant from them is usually 3-6 months if everything goes smoothly.
This is a much faster process than receiving a kidney from a deceased donor. During these 3-6 months , you and your living donor will have lots of tests. These are to make sure you are fit enough for a transplant and your donor is fit enough to donate a kidney.
Michigan Residents Waiting For Organs
Last year, the generosity of Michigan’s 429 organ donors resulted in 1,089 life-saving organ transplants. Another 1,464 donors provided the gift of tissue for thousands of patients in need.
So far this year, the generosity of Michigan donors has led to 555 organ transplants and countless lives improved through tissue donations.
Michigan Transplant Centers
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What Else Do You Need To Know While Youre On The Transplant Waiting List
At least once a year you will be reviewed by your transplant team to check you are still fit enough to stay on the list. You might require further tests.
Your transplant team will tell you how to get to the transplant centre if you have been offered a kidney. You must have travel plans in place.
We understand that waiting for a transplant is very stressful for you and your loved ones. If you feel that you need extra support to cope with this, please contact your transplant team. Social workers and psychologists are available to offer advice and support. There may be other transplant patients who can offer advice and support your transplant team can arrange for you to meet them.
If you have questions about your medications or health while you are on the transplant waiting list, please ask your care team.
Your transplant team may ask you to be involved in one or more research studies, either before the transplant or after it. They will explain this to you in more detail.
More information
How Do I Get On The Waiting List For A Kidney Transplant
To get on the national waiting list for a kidney transplant:
If you pass the evaluation and the transplant team decides you are healthy enough to have transplant surgery, you will be added to the national waiting list.
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Shamgar Connors 42 Is On Dialysis For 12 Hours A Day And Needs A Kidney Transplant To Survive Because He Refuses To Get Vaccinated He Was Removed From The Transplant List
Another person whose life literally depends on being vaccinated is saying hed rather die than get the shot. Shamgar Connors, 42, is a middle school teacher from Virginia with stage five kidney disease.
Hes on dialysis for 12 hours a day and needs a kidney transplant to survive.
However, the University of Virginia Hospital system is telling him that without the vaccine, he cant get the transplant.
Id rather die of kidney failure than get the vaccine, Shamgar told his doctor in a phone conversation.
He doubled down on the decision in an interview with Inside Edition.
I just wanted to make it very clear that yeah, ultimately, if thats the hard choice that has to be made, Im never getting this vaccine. Never. I dont care what they say, what anyone says. Im not doing it, Shamgar said.
Shamgar has two children, and his wife Lauren, a nurse, is also an anti-vaxxer.
Im fighting this battle not just for myself, but for everyone, even the people who disagree with me. Because what they dont understand is today its me, tomorrow its you, he continued.
Hospitals across America are insisting that transplant patients get fully vaccinated before surgery, and they mean business.
Desperate patients are being taken off transplant lists if they refuse. Vaccinated patients have a better chance of survival, so theyre given priority.
The Organ Transplant Waiting List
Nationally, over 114,000 people on the transplant waiting list for much-needed organs. As these patients and their families hold out hope for their second chance at life, the United Network for Organ Sharing manages the list of those individuals across the country, ensuring that the available gifts go to those who are best matched.
Currently, there are over 23,000 Californians on the transplant waiting list. These individuals are throughout the state and a part of every community. About 90% of these individuals are waiting for a kidney transplant.
Learn more about the transplant waiting list and the current numbers here.
This system developed out of the National Organ Transplant Act in 1984, which established the Organ Procurement and Transplant Network , a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. UNOS maintains a database of all patients waiting for various organ transplants.
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